Tag: health blog

  • One Year of #Periodically: Sharing is Caring | #Periodically 27

    One Year of #Periodically: Sharing is Caring | #Periodically 27

    Fanfare alert: it’s been one whole year since I published the first #Periodically blog on Fictitiously Hilary. This marks my 27th blog about my menstrual, gynaecological and all together grossly overshared health. If truth be told, I can’t believe it’s only been a year, it’s been a bit of a mad one.

    So much has happened in the last 12 months, and, as I mentioned last week, writing the #Periodically blogs has given some really awful situations a positive edge. Writing about this never-ending shit-storm has meant I’ve actually got something from the shit-storm. The year would have been a bit of a downer without it.

    Health wise, the last twelve months have seen me hate the pill, have eliminating surgery, an infected bellybutton (nice!), cysts, cyst, no cysts, vaginismus (that was a curveball), counselling, stop running, start yoga, give up sex, several very painful pelvic exams, four very painful ultrasounds, anaemia (another curveball), one trip to the emergency gynae unit, going back on the pill, almost liking the pill, hating the pill again and going on pain eliminating antidepressants. It’s remarkable, but not all that surprising, that I have had so much medical intervention in the last 12 months without reaching a stable diagnosis or any reliable resolution. It’s also pretty distressing to think that things at this point are probably a little worse than they were a year ago. On the bright side, I’m incredibly fortunate that all this medical intervention, except prescriptions since leaving Wales, hasn’t directly cost me a penny! #SaveOurNHS 

    I say directly because my health has cost me financially. The increase in doctors appointments and pain last autumn undoubtedly influenced my decision to go freelance but I don’t regret that decision for a second. I graduated last July, spent four weeks in South America (including a struggle with altitude sickness that makes so much more sense now I know I was anaemic), before having the op and then deciding to go freelance.

    Going freelance straight from university was an awful idea, I knew it was at the time, but #Periodically has been a huge part of my freelance “success” (as in I’m still alive). While I haven’t monetized the blog, #Periodically has opened up so many doors, from top-secret projects that are going to change the world, to helping me get accepted onto the masters course I’ll be starting in September. It’s also let me meet some amazing people, from Period Poverty activists like Mandu Reid and Gabby Edlin (who I met in a toilet of all places), to entrepreneurs and game-changers in female health.

    From time to time, #Periodically has also veered away from my personal experiences and into other things, like femtech and menstrual cup reviews, as well as reviews of books like Sweetening the Pill and It’s Only Blood. The most popular blogs, ‘Does being anti-pill make me a bad feminist?’ and ‘My experience using Natural Cycles,’ combine review and personal experience — something I hope I can do more of in the future.

    In the first #Periodically I wrote, “I don’t want to write about it after the fact, because after the fact might not be for a long time. I want to write about it while it is happening,” and THANK GOD I had that mentality. Who knows when the end of this saga will come, but by sharing my experience, often in TMI detail, collaborating and campaigning I feel like I’ve got so much more from this year than just pain and frustrating doctors appointments. I hope the blogs can help make a few more people sit up and take female health, particularly menstrual health, even the tiniest bit more seriously.

    Thank you so much for reading and sharing the #Periodically blogs, especially if you were only here for book-talk. I have no idea where me or #Periodically will be in another 12 months time, but I can say with some confidence that things are probably going to get weird. 

    My favourite #Periodically is still #Periodically 4, check it out here: “Conversations with Doctors That Shouldn’t Have Happened”. 

  • My Vaginismus & the Vaginismus Network #Periodically 23

    My Vaginismus & the Vaginismus Network #Periodically 23

    I had a different blog planned for this week but after a rather special evening on Friday I’ve had a change of heart. Today I want to talk about something I’ve only touched upon before – Vaginismus. 

    In #Periodically 18 – “Can I examine you?” – I spoke about how my gynaecologist had informed me that as well as the unidentified shit storm working its way through my womb that I had now also developed a “superficial problem” – vaginismus. But that’s the first and last time I mentioned it. Since then, I’ve turned the blog’s focus towards the hormonal adventure I’m going on in an attempt to resolve the internal issues. Given that #Periodically is a blog where I very graphically talk about the inner workings of my reproductive system, why did I stop talking about vaginismus? It was a diagnosis I was neither expecting nor knew much about, but when I started #Periodically I wrote, “I don’t want to write about it after the fact, because after the fact might not be for a long time. I want to write about it while it is happening.” The same is true for vaginismus, so let’s do that. Today I want to talk about vaginismus, what it is and how an evening with a group of extraordinary women at the Vaginismus Network completely transformed my feelings towards it.

    Vaginismus is the uncontrollable clenching of muscles in and around the vagina upon penetration. It can be compared to shutting your eye if someone tries to stick something in it. It’s a reflex, a physical reaction and not one that you have any direct control over. Most of the time it results in penetration, whether that’s a finger, a cotton bud, a speculum or a penis, being impossible and/or incredibly painful.

    The pelvic examination where my gynaecologist noticed I had vaginismus was painful and uncomfortable, more so than normal. When he said that I had vaginismus I was surprised because I don’t think it’s something I’ve regularly experienced during sex. I can think of one, maybe two occasions where I now think “oh, is that what was happening there?” It’s probably also relevant to note than this was nine months after I stopped having sex, for a variety of reasons, including the fact my deep dyspareunia (sex that hurts deep inside) was too much to handle, physically and otherwise.

    This means I developed vaginismus after having had normal and healthy (sort of) penetrative sex in the past. On Friday, I learnt that there’s a word for this too – “secondary vaginismus”. Many who suffer from vaginismus have never been able to endure let alone enjoy penetration, going overdue for pap smears and not being able to use tampons – this is primary vaginismus.

    My gynae gave me the news and said I would need therapy, physio and maybe anti-depressants. In reality he only referred me for therapy, which I started last week after a four month wait. I’m still not having sex but I have had the displeasure of noticing vaginismus on my own for the first time. Why? Menstrual cups! Just when I thought I had mastered them, something bloody well changed. There I was, cup in hand and sort of in vagina. As I tried to get it in place I experienced that horrendous, breathtaking pain for the first time since I last had an internal ultrasound or sex. I immediately removed the cup, steadied myself and caught my breath. When I tried again, lo-and-behold my vagina was closed for business. Rock solid and painful, nothing was getting in there. So it was nickers down, on the loo with a menstrual cup in one hand that I had my first personal encounter with vaginismus.

    Like I said, I have only just started counselling, so I’m at the beginning of a weird “journey” to discover why my body is doing this and how I can stop it, but I personally think that what I’m displaying is “harm avoidance behaviour”. My vagina is closing to prevent further pain inside – it’s quite clever really. There are of course other reasons it could be happening, from the whiplash I’ve experienced from surgery to ultrasounds (all of which have involved something entering my poor vagina) to something I haven’t even realised yet. It does add a further complication to my situation though. As my GP(s) and I concentrate on finding a solution to the internal pain worsened by penetrative sex, I now have to deal with the very real possibility that if and when I next try to have sex, it might not be able to happen. Man, that’s piling a lot of pressure on any future relationships I may have!

    I am lucky in so many ways. My vaginismus is secondary, meaning I know that sex can be a positive experience and that my vagina is, or at least once was, capable of opening. My vaginismus being secondary also means that I have a definitive time span in which to search for what changed to trigger my vaginismus. My vaginismus is apparently sporadic, or it only happens when there’s serious internal pain, meaning that most of the time I can use menstrual cups – tampons pose something of a different challenge, however. It’s likely that my vaginismus will be triggered by sex, but since I’m not currently dating or having sex it’s not a problem I have to deal with at the moment. I have time.

    On Friday I attended the Vaginismus Network’s first meet up in London. I didn’t know what to expect when I walked into the Sh! Women’s Erotic Emporium, but what I found was a room full to the brim with brilliant women who happened to have vaginismus. For most people there, including me, it was their first time meeting others with vaginismus. What was really empowering about the event was that as united we were with the spasming of our vaginas, everyone was completely unique in their experience, not only of the condition but of life, work and relationships. Vaginismus can affect anyone with a vagina, it holds no prejudices. For some it’s easy to pin point what causes vaginismus, for others it’s easy to speculate (like me) and for a few there’s literally no obvious reason why it’s happening, which can make recovery all the more tedious and complicated. Founders Lisa and Kat have created something incredible. As you know, I attend my fair share of female health related events and talks, but this was different. It was like being at the start of a revolution. Some of the ideas being spitballed at the event could be game-changing. It’s certainly spurred me on with that “secret” project I’ve been working on lately.

    In my very limited experience with vaginismus, the impression I’ve so far got from discussions about it (with people who have no experience of the condition or even having a vagina) is that it’s a case of women needing to relax, to lighten up or to be less uptight. Holy moly it felt good to bitch about those judgements with people who really got it. And the truth is, now that a few of us know that we’re not alone in our thoughts on vaginismus, we know that we have to go out and talk about it – otherwise no one is ever going to understand, let alone start researching the damn thing. Friday night saw a barrier come down, so while our vaginas might not want to open, now at least we can open our mouths to talk about vaginismus.

    My experience is new and manageable for the time being, but for many of the people I met on Friday, this is not the case. I am so grateful to have found a group like the Vaginismus Network so early on, imagine what could change if the same was true for everyone? A huge thank you to Lisa, Kat, the inspirational and hilarious psychosexual therapist Sarah Berry and the Sh! Women’s Erotic Emporium for creating such a safe, supportive and fun environment – you’ve already made a difference bigger than you know. Keep an eye on the Vaginismus Network – it’s one to watch for sure.

     

  • Gynaecological Whiplash #Periodically 15

    Gynaecological Whiplash #Periodically 15

    I feel like I should start this blog with a “Previously on #Periodically…” but it might just be easier to read Periodically 10, 11 and 12 if you’re new. If you (understandably) can’t be bothered, here’s the gist: in August I had laparoscopic surgery to look for endometriosis, they found nothing but a regular (functional/ovulation) cyst on my right ovary and said there was “no gynaecological cause of pain”. While my belly button took some recovery meanders, I readied myself for my first doctors appointment since moving back to Essex and to look beyond gynaecology (towards bowels and bladder) to find a cause for my pelvic pain. Since then I’ve processed the news and the language issues I was worrying about in Articulating Pain – saying “dementors” instead of pelvic pain has stuck pretty firmly in my vocabulary.

    I must confess, trying to find the words to articulate how confused I am at the moment is proving difficult. Every time I process one fact, something contradicts it and I’m in a new hole of confusion and disillusion. So bear with me. 

    October started with September’s late period and a whole load of nauseating, black-out pain. And it really surprised me. I was surprised because by linguistically and medically disassociating my pain from my menstrual cycle, I think I thought the gynaecological symptoms would disassociate themselves too. Foolish, of course, but that period was a bit of a wake up call.

    Before my first GP appointment I had my symptom spiel ready, I’d checked that my discharge letter from Swansea had transferred and I was ready to start the process once again. Dr C, my new GP, listened to my symptoms, felt my abdomen, read the “no gynaecological cause of pain” letter, then turned to me and said “I am not convinced”. Excuse me? “I am not convinced that it is not gynaecological. You don’t experience painful periods or painful sex unless there is a gynaecological problem”. He ordered an ultrasound and some blood tests and said he would refer me to a gynaecologist.

    I was pissed off. I’d been jokingly forecasting that the doctor was going to refer me to a gyane in this appointment for weeks but I had been joking. I was mad, and my general attitude was “it has taken me 12 months to get to where I am now (which is nowhere) and now we’re going to start all over again from the same place”. Basically, I sulked for a fortnight. Until…

    This week, I headed to the ultrasound with my mum, confused as to why they hadn’t told me to drink a litre of water like last time. The reason I didn’t need any water was because it happened to be an internal ultrasound. Now they had my attention – I’d be moaning for months that it seemed strange to me that I’d never had one of these. While Dr T, who carried out the ultrasound, and the chaperone described the device as a “wet tampon”, I would describe it as a very solid USB dildo that’s plugged into a computer being watched by two doctors and your mum. To my surprise, it hurt almost as much as sex and has left me in the same horrible post-sex pain, but perhaps we now know why.

    I can’t believe I’m writing this. I have a cyst! Two actually, on my right ovary. Yep, what the fuck? Sorry I can’t be more eloquent about this but I am so beyond confused and conflicted at this point that the words in sentence putting is falling out of nick. (What?) One is a small 2cm functional cyst – potentially an ovulation cyst but where I was in my cycle would suggest otherwise. The other cyst however is over 4cm and looks like an hemorrhagic cyst, meaning it has been bled into, which is, get this, potentially an endometrioma or endometrioid cyst. Hmm, those words sound familiar, don’t they?

    Once I had my nickers back on my mum and I expressed our shock upon this discovery to Dr T, explaining the fruitless laparoscopy results just two months earlier. Dr T said: “what and the laparoscopy didn’t find any endometriosis? That’s funny because all your symptoms point towards that”. We all laughed and I went home with the promise that we’ll check to see if the cyst is still there and whether it has grown in six weeks.

    I say laugh but I mean a sort of hysterical confusion and shock induced gurgle. Now, to answer some question my friends have hit me with since the Great Cyst Discovery of October ’17:

    What does this mean? I don’t know.
    Why didn’t they find it in the surgery? I don’t know. It’s possible that it wasn’t there, or that cysts have come and gone and during the lap things just happened to be clear.
    Is this PCOS? I don’t know.
    Is this endometriosis? I don’t know.
    Will they take it out? I don’t know – seems unlikely given my favourite sentence “sometimes you just have to live with it” was uttered during this appointment.
    If they do, would you want to go through surgery (belly button nightmares) all over again? I don’t know.
    Did they actually do anything in the laparoscopy or did they just cut you open, have a cup of tea and then stitch you up (badly)? Maybe. No. A lot of my frustration earlier this week was directed at the surgeons in Swansea, but I know that’s unfair. They knew what they were doing, things must’ve been clear in August. Or maybe the functional cyst they saw was not as functional as they thought.

    I don’t know whether to be mad, happy or upset – I am just very confused. I guess I can say “ovulation pain” rather than “dementors with knives” again now? Plus there’s the fact the whiplash might continue if in six weeks the cyst has disappeared without a trace. I almost begin to get that fuzzy “I’m not imagining it all!” feeling, before I begin to wonder if I imagined the whole surgery in the first place.

    So things are once again painfully up in the air, but for now I am just grateful that despite my obvious doubt, Dr C listened to his gut.

    A bit lost? Don’t blame you. Find the rest of the #Periodically blogs here. Or if it’s a little too TMI for you, I blog about books too here and, finally, last week’s blog can be found here.

    wth